Frequently Asked Questions.

​​1. How do I get evaluated for CCI/AAI?

​​2. I have ME, but I don’t have any breathing issues or neck symptoms. Does this mean I can’t have CCI/AAI?

Plenty of people diagnosed with CCI/AAI have no breathing symptoms. Some have no overt neck symptoms. Breathing problems and neck symptoms are not required for a diagnosis of CCI/AAI.

So yes, you could have CCI/AAI even if you have "only" the typical ME symptoms: POTS, Post-Exertional Malaise (PEM), etc.

Using myself as just one example: I had classic ME for three years, and during that time I had no breathing problems or overt neck symptoms. Those only emerged following a minor dental surgery that placed considerable strain on my neck.

3. I have ME. What symptoms should I be aware of that would suggest CCI/AAI?

Consider that PEM itself can be caused by CCI/AAI. Therefore, it would follow that if you have ME, it would be worthwhile to be evaluated for CCI/AAI.

Consider my own experience, Jen's experience, as well as Mattie's experience. We all had ME, PEM, POTS. We all tested positive for CCI/AAI. We all improved after our fusion surgeries.

In short, CCI/AAI is something to check for, as it could be causing your ME.

4. I had an MRI and was told that it was normal. Is there still any chance I could have CCI/AAI?

Yes. During my years with ME, I had several MRIs. All were read as "normal" by radiologists and other MDs who did not know to check for CCI/AAI, and who were not trained to recognize it. Jen had a similar experience, and so have thousands of others. ​It's the norm. I look forward to the day when this is no longer the case, and I'm actively working to make that day come sooner.

At this time, in order to effectively rule out CCI/AAI, you will need to send your MRI to a CCI/AAI-literate neurosurgeon. Here’s a list of them.

5. Are there any non-surgical treatments for CCI/AAI?

Note: The following information is based on extensive observation. It's not medical advice.

I have yet to see someone recover as a result of non-surgical treatment. However, I have seen some people improve to varying degrees. Some have found benefit from: strengthening their neck and shoulder muscles, bracing their neck with a cervical collar, and undergoing intermittent cervical traction.

Strengthening: Many people with ME are unable to tolerate any physical activity, including simple neck muscle strengthening exercises. Others, however, can tolerate isometric neck muscle strengthening in varying amounts. Range of motion neck exercises are not recommended. Excessive range of motion is the entire problem in CCI/AAI!​Cervical collar: A cervical collar doesn’t seem to often help with core ME symptoms. For example, it didn’t touch my POTS or PEM, but it did help me and others with our dizziness and breathing problems. Per the instructions of an expert neurosurgeon, a cervical collar generally shouldn't be worn for more than a few hours per day, as it can weaken the neck muscles over time. So while a collar may provide some temporary benefit, in long run it can make your craniocervical area even more unstable by weakening your stabilizing neck muscles.

Cervical traction: The safest way to do this is to have a trained physical therapist manually grip your skull and apply cervical traction. If you're fortunate to have friends or relatives available, the PT can easily teach them how to do this. Other methods include buying an inflatable cervical traction device, or even an over-the-door device.

​Prior to my fusion, I tried all of the above. Manual traction helped me the most, followed by the inflatable cervical traction device. I saw no benefit from the over the-door traction device, and it struck me as being a riskier method.

Bottom line, when it comes to cervical traction, be careful! Some people find that they feel great in traction and (understandably) start to overdo it. As a result, their baseline symptoms get worse when not in traction. This can happen because repeated excessive traction can loosen the ligaments over time, worsening any pre-existing CCI/AAI.​The last thing you want to do is put excessive strain on your ligaments and neural tissues. If you’re going to try cervical traction, start slowly, don't overdo it, and pay close attention to how your body responds.

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